The Bun has not gained weight since her increase in food on Monday, June 29th. Her food has increased 110ccs per day and we’ve doubled her dose of diuretic and yet, she is the same weight as way back before her increase in food or medicines during the early part of June. This confirms that she was retaining fluid. Since we doubled her diuretic, we have not had any pass out moments. Praise God!

And although the scale is not showing her growth, I feel like she is getting tall. She almost reaches from one end of the pack-n-play to the other! When did this happen?

For whatever reason, she’s experienced bad episodes of gas the past 24 hours, which included a 2 hour crying spell last night along with nighttime interruptions and more today. So, all of us are worn out and tired this evening. Signing off for now, so we can all go catch some much needed zzzzsss.

Philippians 4:4 (NLT)
Always be full of joy in the Lord. I say it again—rejoice!

Sweet potatoes are everywhere…on the outfit, the bed, her hands, her mouth. Orange stains everywhere! I am happy that she is tolerating the food, but it is not fun to clean up each day!

Physical therapy was a bit later in the day today, so there was about 2 hours and fifteen minutes between appointments. This worked better as normally there is only about 1 hour and fifteen minutes. Within that extra hour, Ella was able to eat, take a nap and have plenty of time to wake up with lots of energy. The PT suggested taking Ella over to the stairs and doing therapy over there to mix it up. Ella responded well as she played with her giraffe, the laptop computer and her books.

In between, she is still rolling over in her pack-n-play, weight-bearing on her arms. She has made so much progress in this way.

Also, her teeth are definitely bothering her. She was putting everything in her mouth today, especially her hands. She was also licking her forearm, trying to see if even her forearm could fit in her mouth.

We went for a drive later to run some errands. Boy, she just loves getting out and taking a ride in the car. It’s great!

2 Corinthians 1:4 (NLT)
He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.

The weather hit 99 degrees this morning, so the air conditioning went on again. However, it is 7pm and it has cooled off to a comfortable 70 degrees.

Ella’s OT session was good again…and messy with sweet potatoes. All the therapist is doing is taking the slightest amount and placing it on her fingers and on her lips. You will also notice in the pictures that we are using a corn de-silking brush to help with tactile stimulation.

This afternoon, the Bun did not want to work for the physical therapist. Once again, we just hung out as Ella dictated the appointment. Finally towards the end, she decided that it might be fun to try and stand up. So, we got a little bit of exertion out of her. Hopefully more exercise tomorrow!

Signing off for this evening and thanking the Lord for our little Bun.

Romans 12:12 (NLT)
Rejoice in our confident hope. Be patient in trouble, and keep on praying.

It was low 90’s in Denver today, so the windows were shut and air-conditioning was cranked on! It was very hot!

Ella had a great OT session. The therapist decided to try sweet potatoes again. Ella did pretty well at tolerating them. Of course, they got everywhere!

However, she was tired when it was time for physical therapy. So, we socialized with the PT, but the Bun did not get much exercise! Oh well, we can try again tomorrow.

Ella tolerated her full amount of feeds again today. We’ll see if she gains weight over the next few days.

Psalm 62:8 (NIV)
Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.

I am not sure why Ella thought her alarm clock was set for 6:45am, but that is when she started to play in her crib this morning. This probably explains the longer nap late this afternoon.

Today, her food was increased to 250ccs at each feed, for a total of 1250ccs. We’ll see how she does over the next few days.

We did not have any therapy appointments, so it was a relaxing day with the Bun. It was nice and warm, so Ella and I spent some time together hanging out on the deck. Heck, who wouldn’t enjoy watching movies in the shade with a view?

Yeah, the video above has the Bun showing her skills at grabbing the binky followed by her NICU pillow, called a “frog”. And of course, Grandma West made cute covers for all her “frogs”, so we can be fashionable. There was a day where Ella was not as strong, but now she has the binky and “frog” grab down to a science. So cute…

Ella had a few times today where she would just start crying. And she had several runny diapers. Sure enough, teething has struck again. There are 2 more lower teeth that have broken through her gums and she has had everything in her mouth: hands, feet, binky, etc.! So, she would be fine and then out of nowhere, she would start crying. I think maybe her fingernails would hit her sensitive gums. Poor Bun!

We increased her food slightly today to 240ccs each feed, giving us a total of 1200ccs (an incremental increase of 60ccs). She tolerated it fine, so we will likely give her another increase tomorrow.

Our babysitter was scheduled to come tonight, so we could have a date night. Unfortunately, Josh was not feeling well today. So, we are looking forward to date night next weekend.

Today was nice and warm in Denver. We took advantage by running some errands as a family because it is always fun to take the Bun for a ride.

By the way, I want to ease everyone’s mind. Since the news of Josh’s job loss this past week, many have asked about our health insurance benefits. The reality is that we have a short window before we have to start paying for our health insurance. We are so thankful for it not being canceled immediately. That is huge for our family.

The good news is that Cobra exists and although it is very expensive, it is something we can use for up to 18 months, if we need to. Believe it or not, paying Cobra each month is still going to be way less expensive than not having insurance at all for Ella. The Bun incurs costs every day: from special formula to oxygen, doctor visits to therapies and durable medical supplies to medicine. And that is if she does not have any major problems. If you add any unexpected things, we all know that any hospital visits can be crazy expensive. Heck, she became our million-dollar baby before she ever left the NICU in Florida!

In the meantime, please continue to pray that the Lord will provide the perfect opportunity for Josh with amazing health insurance!

Ella was in a great mood today. She had no other therapies besides physical therapy. The therapist and I were noting that it seems like Ella has returned to her old self. It was so good to see…

This means that the Bun was likely getting too tired between OT and PT within a few hours of each other during the day. So, now that we have dialed back OT and trying to conserve her energy for PT, it has worked well this week. We will be trying to continue that trend so that Ella can get benefit from both of her therapy appointments.

Plus, we started giving Ella more diuretic last night. Even today, she has had more energy overall which is good. The PT even noted that her color looked better today.

And, well it happened…It’s unfortunate, but Josh was laid off today from his job along with countless others as part of a “company reorganization”. Fortunately, the company was generous which will give Josh a little cushion for finding his next venture. We’re just thankful for what the job has provided to our family up to this point. It’s been 3+ years and along with countless other things, this company let Josh telecommute in Florida while Ella was so sick in the NICU. That was amazing and meant so much; it was priceless for us.

Please pray for guidance and direction as we seek His next steps. We know He has a plan for everything and continue to trust in His ways.

Psalm 9:10 (NIV)
Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

Wow, Ella is almost 2 years old. Crazy!

Today, she laid in her pack-n-play during occupational therapy. She was having such a good time that she showed off by rolling on her tummy. Too bad that isn’t what the OT cares about – she wants her to eat! In any case, it was another good session. We are going to try and see if we can get Ella to drink again. It’s been a while since we even tried, so for now, we just stuck an empty bottle in her crib so she can start to look at it again.

When physical therapy came later in the day, Ella started off right away by sitting up. She was having a great time with her physical therapist. It was the best I’ve seen her do in 3 weeks. It was a session just like she used to enjoy before. So, I do think there is a correlation. In other words, we have to take it easy during OT by not making her work too much, so she has energy for PT. Otherwise, it is just too much work for the Bun.

Tomorrow, we only have a physical therapy session later in the day. We’ll see if she does well again. Also, our part-time sitter will be coming over tomorrow evening. I’m going to shadow her and see how things go. We’re excited to get that in place.

Ella’s pulmonologist called today and we got on the same page. We are not going to have any invasive procedures for now. Instead, we are going to increase her diuretic. She currently takes 2.5 ml, twice a day. We’re going to give her 4 ml, twice a day. We’re going to do that for the next couple of days and see what happens. We hope that it helps her body out even more than the initial increase in diuretic about 10 days ago.

Also, we talked about Ella’s weight and how she has not gained weight since the last week of April. Our plan is to let the new dose of diuretic take effect for 2 days and then work toward a 10% increase in food. We’re hoping this combination will make her feel better, get her to gain weight and avoid any pass out moments.

Praising the Lord for this wonderful little girl. She is so sweet and special.

Habakkuk 3:3
…His brilliant splendor fills the heavens,
and the earth is filled with his praise.